Tragic Loss in Kitchener: Young Mother with Rare Cancer Inspires Fight for Critical Drug Funding

The heart-wrenching battle of a young mother from Kitchener, Ontario, has ended in tragedy. Noor Ayesha, just 26 years old, passed away after a courageous fight against cholangiocarcinoma, a rare and aggressive form of bile duct cancer. Her diagnosis came just months after giving birth to her daughter in February 2023, marking a bittersweet chapter in her life as she battled the disease.

Noor was determined to maximize her time with her newborn. Central to her fight was the drug Pemigatinib, marketed as Pemazyre, which offers a glimmer of hope for patients battling advanced stages of cancer. Unfortunately, this essential treatment was not covered by Ontario’s health plan, prompting an outpouring of community support to raise funds for the drug, which costs approximately $15,000 a month.

Dr. Andrea Molckovsky, Ayesha's oncologist, shared that Noor had access to Pemigatinib, reporting that it had shown effectiveness between May and September. The community rallied around the family, contributing to a GoFundMe campaign and demonstrating immense solidarity. “To see people coming together for Noor was overwhelming,” Dr. Molckovsky recalled emotionally.

During this time, Ayesha made unforgettable memories with her family, engaging in activities like jet skiing—moments that showcased her enduring spirit even in her battle against such a formidable illness.

Tragically, as her cancer advanced, the drug ceased to be effective. On the day of Noor’s funeral, her husband Hossain Mohammed expressed his profound loss, stating, “Proud of you, my wife. I’m really missing you.” Their love story, though marked by sadness, is one of resilience.

In a twist of fate, just weeks before her passing, the provincial government made a significant announcement, deciding to fund Pemigatinib on a case-by-case basis. This decision came in light of promising new evidence and relentless advocacy from families like Ayesha's, pushing for essential treatments for cholangiocarcinoma.

Dr. Molckovsky felt that Noor’s advocacy played a crucial role in this decision, giving families hope that other patients might access treatments that could extend their lives. “It brings a bit of relief to know that her efforts could impact others,” said Mohammed Islam, Noor's brother.

Despite Noor's passing, her family has vowed to continue her fight for Pemigatinib's permanent funding. “I want to show my daughter that her mom was a warrior,” Hossain declared, clearly committed to her legacy. The family is rallying support to ensure that future patients won’t have to endure what Noor did.

As discussions around Pemigatinib continue, the Canadian Drug Agency is open to feedback from patients and healthcare professionals until December 13, 2024. Advocates are hopeful that a resolution will be reached by March 2025, and that Noor Ayesha’s brave story will serve as a catalyst for meaningful change in access to critical cancer treatments.